Thursday, April 1, 2010

Our Story; For Autism Awareness Day Part 1

Tomorrow is World Autism Awareness Day, so a post on Autism and our family seemed appropriate. As most of you know both of our sons have been diagnosed with Asperger's Syndrome...but what exactly does that mean?

First off, the label itself means very little. It is likely soon to be obsolete anyway. In the next version of the DSM "Aspergers" may simply be merged into the Autism spectrum diagnosis. I am not sure how I feel about this. At the very least it is a good lesson in not becoming attached to or limited by a label. It is all so subjective anyway.

Our twin sons were both a leetle different right from the start. There was no sudden regression after a vaccination (boo to Jenny McCarthy, boo!), and no major birth complications. I have no outside factors to vilify, no circumstances to blame, this is simply part of who they are. I do hope that one day science will unravel the tangle of genetics and possible environmental triggers that are leading to this autism spike, but for now, I don't torture myself over the "whys". It just is.

Looking back now I can see the signs of difference from day one, but at the time, particularly as first time parents, we had no idea. From birth they were both startlingly alert. They slept only a fraction of what newborns generally do. They cried a lot, needing near constant motion to soothe themselves. It was a very difficult time. (how is that for a gross understatement? Honestly, at times I thought I would was very tough. I don't even really remember how we all got through, but sure enough somehow we did.) The boys hit most of their milestones early. It was as if they were driven by relentless internal motors...constant motion, constant exploration, almost manic curiosity about the things around them. They left a swath of destruction in their wake as they dissected every object they came in contact with, and could not be left unattended for a second. As you can imagine, we had to take child-proofing to entirely new levels.

They spoke early too. Entire sentences and multiple syllable words springing from their little lips long before they were due to. We and their pediatrician thought we had a couple of prodigies on our hands. By about 2 1/2 they were both completely obsessed with trains! They lived, breathed and practically ate trains. They would go back and forth in an Abbott and Costello "Who's on First" type routine as they recited the steps in a steam engine's workings, over and over again.
They were hard to keep up with, but man, were they fun! Such interesting little characters, and if not exactly willing, very, very bright students. We learned about trains...all about trains. They learned to read, easily and early. They had all their colours, numbers etc. down cold. We figured they would ace preschool, no problem.

(any parent out there with an Aspie child is smiling knowingly right about now)

They actually almost got kicked out of preschool...and they only went twice a week!

I am laughing as I type this now, but it wasn't funny then. It was horrifying. I felt like a total failure as a parent. And my poor little sons! Now we know that it was complete sensory overload for them. Their first experience at being plunked into the middle of a class full of noisy kids and being left there, without one on one adult attention, for hours at a time. Of course, it was a disaster! But then, all we knew was that somehow we had failed them.

Thus began a redoubling of our parenting efforts. We were paragons of consistency and discipline. We worked intensively on everything from eye contact to how to properly greet someone. We read books on how to make friends. We role played. We made our own books about whatever issue was at hand. We had play dates, swim lessons, speech therapy group (by then articulation problems had been dxed), library group etc. Anything we could think of to get them ready for the rigours of kindergarten. Little did I know that we were unwittingly doing exactly what we should have been for ASD kids at that age (yay for dumb luck and a parent's instincts!). But still, the frighteningly intense tantrums that often came seemingly out of the blue were increasing in frequency and severity, and it seemed to be one step forward and three back with every social skill we tried to teach. Sleep was still a huge issue, and many things like buttoning clothes or pedaling a tricycle seemed to be utterly beyond them.

Why wasn't I more worried at that age? The idea of ADHD crossed my mind occasionally, but I knew that at times they could focus quietly for hours and hours, so it just didn't seem to fit. And they were clearly so incredibly smart. They were also struggling with a complicated combination of multiple food allergies, environmental allergies, asthma and eczema, so it was easy for us and their doctors to chalk up many of the sensory and behavioral issues to the allergy problems and med. side effects. I had never even heard of Asperger's syndrome. Plus they were a lot like me. I can't wear sweaters or stand tags in my clothes either, and my head feels like it is going to explode when I am in a crowd too, so it seemed pretty natural and not too worrying for them to take after their mom. Of course, I didn't realize then that I have more than a toe in the Autistic pool myself.

Kindergarten came with more problems. One of the most significant being when I realized that the teacher didn't think either of them knew their alphabet...these were kids who could already read. They had an inability/no motivation to show any of their skills at school. It was maddening. The first undeniable unease of "something's really wrong here" began to seep steadily through the cracks, but the teachers reassured us that it was just "social immaturity" and also implied a lack of effort on our parts in socializing them. I was too full of guilt already not to meekly take more on board, and just kept trying harder.

Grade 1 and one son seemed to be doing a bit better, making a friend, fitting in with the routine, while the other received a scathing first report card, including everything from "makes repetitive, disruptive noises" to "walks on his toes" to "will not make eye contact" (all pretty typical Autism spectrum signs). Still, with no suggestions for assessment or accommodations, it was again treated as a strictly behavioral/parental permissiveness issue. The other son's school behavior also soon disintegrated. Around this time we moved to a great new school, and our suggestions that everything was not quite right were taken seriously. We were finally put on the long waiting list for school assessment (6-12 mos!) near the end of the Grade 1 school year, but by about halfway through Grade 2, the problems were so pervasive that we couldn't wait any longer. We decided to pay to have the assessment done privately (in other words very expensive, but right away).

After our very first meeting with the Dr. doing our assessment, she suggested that we should start reading up on Aspergers and Autism.

It was a punch to the gut.

It was a huge relief.

I must stop now, because it is Spring Break and I have two boys who have been waiting patiently and then impatiently for over an hour, for me to work on some stop motion animation with them! Part 2 coming tomorrow.


  1. wow! amazing story. i know i keep saying this, but man, i am awed by your parenting. you are tough as nails, girl!

  2. Hey classmate! :) And I am tenacious. (also called downright annoying and doesn't know when to quit when people are feeling less generous with me ;) But my boys are amazing. If you met them you would see, I couldn't not keep trying to be the best parent I can to them, they inspire me to try to be even one tenth as brave as they are.

  3. wow, i will be pimping your blog today. AMAZING post. thank you so much for sharing your adventures in parenting with us. you never cease to amaze me...go e :)

    can't wait for the 2nd part!

  4. I love your courage and your undying commitment to giving your boys the best possibilities.

  5. Wow. It's great to get the story from the beginning. And as always, hats off. A year wait for an assessment is just criminally negligent. A year in a kid's life is huge. Yay for you guys that you didn't wait. I have met 'em and yup, they're great. More story. More story. Can't wait for next stop motion vid. deb

  6. Thanks guys. Leel, you can pimp muh blog whenever you'd like. And Deb, they are pretty awesome aren't they? :) Next stop motion is in the works. Such fun to do!


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